Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Monday, July 22, 2013

Hailey has pushed through this last relapse like a champ. She was unable to sit or crawl for about 3 weeks until her head stopped spinning and she regained her strength. We kept up with our appointments and her physical therapist, not ever seeing a child with leukodystrophy, was amazed at how far Hailey would push herself during PT.

We had been discussing getting Hailey a Gait Trainer (which is like a large walker) before she had relapsed. We knew we would have to fight our insurance for it and they would come back and say that we could order it but if they denied it, it would be our bill to pay. Well, with a price tag of over $7,600.00 we knew we weren't going to be able to just pull that out of our hat.

So what to do? We want Hailey to get what she needs, we are the parents that need to provide for her, insurance is suppose to help. When ever an insurance problem comes up I always ask myself what I pay for every month when they do nothing for me? Since Hailey is a minor and for some odd reason doesn't qualify for disability she (we) can apply for Medicaid. If we get the gait trainer and submit it to medicaid and they help us pay for it we will be good to go. Until everything gets figured out we went ahead and put the order in for her gait trainer.

After a month when the GT arrived Hailey had already had and came out of her last episode. She was ready to get walking all alone.

At the end of August will be 1 year that Hailey hasn't been able to walk and has been wheelchair bound. The days, and months are going by fast in slow motion if that makes any sense. On one hand I can't believe it's been a year on the other, everyday is such a struggle and it seems like it takes forever for 1 day to pass. Especially when she had her episode that was the longest 3 weeks in a long time.

Hailey was ready to get started with her walker. She did so good. Always with a smile on her face. She walked up and down the room.

It is so important for us to be able to give Hailey the independence she wants so bad. It breaks my heart when she tries to get up and do something and then gets called back to reality that she's unable to walk anymore. But I am glad that she will keep trying. Who knows maybe one day her brain will communicate with her body and follow direction.

The other day at her school all she wanted to do was get out of her wheelchair and dance to the music the other kids where dancing to. Since I am around Hailey 98% of the time I have experienced the un-nessasary neglect some children show towards Hailey. I understand that they don't get "it." Why can't she walk? What do you say when a little kid asks that? She's sick? Well, kinda but don't worry you won't catch it. When there are kids that won't play with Hailey there are kids that don't see the wheelchair and will play with Hailey. It's hard when you see you child get left out of things that she obviously wants to be a part of. I've seen it and it hurts, but I don't let it get to me. I try to "fix" it when I can. Josh hasn't been around this part of Hailey's life. He's at work when she's at school and I attended school with Hailey for many many days seeing this happen several times.

Over the weekend we attended a festival where there was music, food, and dancing. While I went to get food, Josh was with Hailey and she wanted so bad to get out of her chair and play with the little girls that were dancing to the music. When he takes Hailey to where the girls are the girls move. He helps Hailey go to where the girls are now, they move again. Hailey is getting upset wanting those girls to hold hands and dance with her, but they are moving from here to there and not including Hailey. Once I get my food and make it back I go to Josh and he asks me to take her and he leaves. I knew something was bothering him so I leave Hailey with my mom and go after Josh. He was so upset about what had happened. He tells me with tears that, "all she wants to do is play with them and she can't." I kind of think I should have prepped him for this. You never what to think that people are saying, "oh look, no one wants to play with the handicapped kid." There are people who do and there's nothing I can do about that. I've had people read my blog and actually tell me, "I'm so glad this isn't happening to me, I'm so lucky." I don't say what I want to say back and maybe I should. With Hailey I become her friend and I tell her I want to dance with her and I want to play with her, she won't be alone. Once I finished talking to Josh I went back in and my mom and a family friend were with Hailey and those same little girls were with and they were holding hands and dancing together. Hailey was so happy!

So when things come up that cost thousands of dollars and you think there is no way for you to afford something that, that will help increase the quality of life for your child, you just go for it. If it works out, awesome. If it doesn't, well...that's life. If it takes us $20 a month for 32 years then that's what it'll have to be. You can't put a price on your child's smile.

Thursday, July 11, 2013

AFO stands for Ankle Foot Orthotic. I talked about them before in this blog. Hailey got her first pair in November of 2012. At first she HATED them. Her feet where always pointed like a ballerina and her spasms were out of control. She wore her first AFOs for 12-15 hours a day and they put her foot in a 90* angle position. (Neutral)
She grew out of those AFOs in April. Kids grow out of shoes so fast! I was pretty bummed when she grew out of these after only 6 months of use, it's was almost like paying $500 a month for shoes and now she can't use them anymore, and that's the end of that. Since they are molded strictly to her foot they can't be recycled.?
We took her to get fitted for new AFOs with the thought that she's going to start to use a gait trainer and will need shoes that will allow her to flex and contract her ankle to "walk" in the trainer. We got her AFOs then she had an episode and it set us back so we had to hold off on the gait trainer. We are still fighting working with the insurance to have that approved. It's been almost 2 months and apparently they can take up to 90 days to approve or deny.
So with these new AFOs Hailey has to get used to them once again. Starting off with 2 hours a day for 5 days then 4 hours then eventually all day. She wears them to school and as soon as she gets off that bus she says, "Take it off" and points. We have to distract her but she is very adamant about getting her way. These one provide more stretch which cause more cramps which cause spasms which cause crying.
These are also different because these ones slip into real shoes. Shoes that are 2-3 sizes bigger then her foot. So we had to find the brightest pinkest shoe that we could. Things that are pink are easier to tolerate!

Saturday, July 6, 2013

Right before her birthday Hailey fell in LOVE with the Littlest Pet Shop animals! We started off with 9 but ended up with 50+ pets. There was a little girl who was done playing with her pets and donated them to Hailey. At first Hailey tried to name every single one of them, but it was getting a little out of hand and pretty darn tough to try and keep track. Now we have names like, pink bunny, brown puppy, zebra guy and fishy...

Every time we leave the house Hailey gets to pick 1 pet to come along with us for the ride. She was kind of bummed they don't get to go to school with her.

Monday, July 1, 2013

Most of the people who read my blog read my posts on Facebook. It's just so much easier to post a little blurb on there and have everyone caught up. I still feel like people don't really read this blog. I'm told they do though...It's odd for me to think that because this was once my diary and everything was so private.

Two weeks ago when I went to Hailey's room to get her ready for the day. I noticed she was blinking a lot. When I sat her up she couldn't hold herself in that position and when I put my hand on her back she started to do her little body relapse circles she does when things are going to start to go downhill. I just looked and her and said, "oh no..."

I texted Josh and pretty much wrote, She's relapsing again. He had said that it was early in the day give her some time to wake up more and let me know how the day goes. I texted back and said, "I've seen this 5 times before, I know what it is. It's happening again." Hailey's speech was slow and she asked if she could crawl. I put her on the floor and she bobbled. I put her in the crawling position and just yesterday she would take off, this day she fell over. She was very lethargic. All things/signs we've seen before.

Since there wasn't anything medically that could be done for her this would be the first relapse that we would not admit her to the hospital, no IVIG treatment, no poking, no blood draws, no sleepless nights in a hospital room alone, just me and her with me crying myself to sleep.

Dr. Sarah did come over in hopes that maybe an adjustment on Hailey would either relax her or even reduce the duration of the relapse. We are so grateful for Dr. Sarah. When Hailey can't see Dr. Sarah, Dr. Lisa is there for Hailey as well.

She started the vomiting and it seemed to stay with her for a longer time then any of the rest of the times. Her eyes were "getting stuck." Another thing with eyes was that when she was sleeping she would get startled and do a moro reflex followed by her eyes rolling up in the back of her head and not being able to snap out of it and focus. That was pretty scary, still is.

I called her pediatrician to ask for a refill on anti nausea medication and to let her know about the eye thing. She said that she would suggest an 24 hour EEG. She also suggested maybe hyperbaric treatments, and maybe also going to a children's hospital in California that does research studies and trials.

It's a tough call. Doctors tell you that basically there is no cure, treatment or even hope your child will ever get better or survive past age 8 so you try to live life and be a family and enjoy your time together. Then on the other hand what if there is something more I can do, some where else I could take her. Do I want to live this life we have in and out of hospitals again? If we travel I want it to be fun, not be to go to another hospital to be poked and scanned and have her cry. What if they suggest something that could help? What if it's a brain biopsy again? What if we put her through more tests and they find what they always find...NOTHING. We've done 3 lumbar punctures, 8 MRIs dozens of blood draws, 4 IVIG treatments, 1 PIC line, 1 Central Line, and a blood transfusion all in less then 2 years! It's too much right now.

There is 1 thing that was different this time around and it's kind of bugging me. I don't know if there was too much going on with Summer School on the horizon, Therapy appointments we went to, the days just weren't long enough for everything I had to do, but the thing that didn't happen this time was that...I didn't cry. I was tired and I was mad, but I did notice I didn't cry that whole time.

I cry every time. Why not this time? There is a time when you want to do everything in your power to make your sick child better and you cry and you're mad and there is nothing you can do and then you just want it all to be over with. You want the pain to end. But when that pain ends I think another begins, so you are just stuck. "Living" each day. It gets worse for me when I have nothing to look forward to. We took Hailey to Disneyland, we went on our Make a Wish trip, we had family come visit for Hailey's birthday. Those were all things that kept us excited for each day. I also wasn't alone, I got temporary breaks. When this relapse happened it felt like it rained on a parade we just started. Hailey was sitting up on her own. She was crawling again and just as fast as the sun sets and rises it was gone again. All that work, another memory now. Hailey has to start fighting all over again and I can tell she's tired, but she won't give up, so we can't either.

Josh says he wants to take Hailey to the Grand Canyon this year. While that doesn't sound like the most exciting thing in my eyes for a 5 year old, it's something he really wants to do with her so maybe I can try to look forward to that? This month is packed with appointments and school, but I'm hoping to get a break in August.

Josh and I are also trying to live a Paleo lifestyle while I just call it a diet. I hear that people who are Paleo are be more energetic, sleep better, or just feel better in general while you help reduce the risk of lots of health problems people are running into now a days. I might not be very happy or enthusiastic about it (in fact I'm kinda bitter about it), but I only want to give it a whirl for 45 days. If anything else happens besides losing weight I might consider maybe doing a 80/20 diet. Giving up sugar cold turkey along with my Cherry Coke Zero has been BEYOND rough! Finally after 3 weeks I've lost 8 pounds so I have 30 days to go!

If Hailey can learn to live without the regular diet she was used to then I guess I can at least give this my best try, but seriously no soda is HARD!

I wrote about the benefits of HippoTherapy previously and how excited I was to get Hailey involved. We have finally been able to have this be a part of Hailey's many therapies. Bright and Early on Saturday mornings we head out about 45 minutes away from our house to go see, "Hailey's Horse." Now I won't lie. At first this was pretty scary for Hailey and me both. They pretty much just throw your kid on a horse and expect it to go well and it did not go well for us. I thought they would introduce her to the horse tell her what she was going to do and so on...but no. That did not happen. So the first lesson had a lot of tears involved but they promised it would get better. I certainly wanted to quit and find another horse therapy place, but Josh kept telling me, "they know what they are doing."

The first 2 lessons were really rough, but then Hailey had her relapse and I was 95% sure we wouldn't be able to participate anymore. They do NOT do tandem riding and Hailey was having such a hard time holding herself up. She spent the whole time crying and laying on the horse. I felt so bad for her. When I asked them to hold her up, they told me that she has to want to do it on her own. That's hard to hear because I wanted to say, "She wants to but SHE ISN'T ABLE TO!" When she did sit up her head kept bobbing around and I kept asking Josh to tell me if this isn't for her, and he kept saying, She'll be fine."

Last week she did a lot better, but it was so hot out! She did hold herself up 75% better then the week before. She did lay forward a few times and cry, but again her strength isn't there right now. Her head did NOT bob as much as it did last week and we were happy to see that improvement!

We get a week off this week so we won't be able to see Pablo because of the holiday. We will be back the week after and see if things will get even more easier on the both of us! We won't know unless we try.